B P R S Medical Assistance in Dying and Mental Illness under the New Canadian Law Jocelyn Downie MLitt SJD FRSC FCAHS University Research Professor, Faculties of Law and Medicine, Dalhousie University, Halifax, Canada
Justine Dembo MD FRCPC Medical Director, Reconnect Trauma Center, Pacifi c Palisades, California, USA
Keywords: medical assistance in dying; legislation General) v EF in which the Alberta Court of Appeal unanimously rejected Pothier’s and the Attorney General of Canada’s arguments n June 17, 2016, An Act to amend the Criminal Code and interpreted the Carter decision as not excluding individuals and to make related amendments to other Acts (medical with mental illness as a sole underlying condition.7 In paragraph Oassistance in dying) came into force.1 In the lead-up to the 59, the court writes: “As can be seen, in Carter 2015 the issue introduction of the legislation, the issue of whether mental illness of whether psychiatric conditions should be excluded from the should be an exclusion criterion for access to medical assistance in declaration of invalidity was squarely before the court; nevertheless dying attracted considerable attention (i.e., excluding both patients the court declined to make such an express exclusion as part of with a mental illness and some other co-morbidity, and patients its carefully craft ed criteria. Our task, and that of the motions whose sole underlying condition is a mental illness). Th e Provincial- judge, is not to re-litigate those issues, but to apply the criteria set Territorial Expert Advisory Group on Physician-Assisted Dying out by the Supreme Court to the individual circumstances of the and the Federal Special Joint Committee of the House and Senate applicant. Th e criteria in paragraph 127 and the safeguards built on Physician Assisted Dying both heard testimony on each side into them are the result of the court’s careful balancing of important of this issue, but both ultimately recommended against having societal interests with a view to the Charter protections we all enjoy. mental illness as an exclusion criterion.2 Intending to go against Persons with a psychiatric illness are not explicitly or inferentially these recommendations in part, the government attempted to excluded if they fi t the criteria.” Th e Attorney General of Canada exclude all individuals whose sole underlying condition is a mental chose not to appeal this decision. We do not attempt to resolve illness. However, aft er a review of what the legislation actually this debate here but focus on what the legislation establishes, says and means, as well as the scientifi c literature on mental rather than what the Supreme Court of Canada decision in Carter illness, we conclude that, despite the government’s intention v Canada (Attorney General) requires – that must remain the and statements to the contrary,3 the legislation does not actually subject of a future paper. exclude all individuals whose sole underlying condition is a mental illness. Th e government should therefore stop giving the public misleading and incorrect information. By disseminating 1. What does the legislation say with misinformation, the government ensures that individuals (by respect to mental illness? defi nition experiencing enduring and intolerable suff ering) may be denied access to medical assistance (by health practitioners who have been misled by the misinformation) when they are Th e legislation establishes criteria for access to medical assistance entitled to such access under the legislation passed by Parliament. in dying. Several elements of the criteria are particularly relevant to our discussion of medical assistance in dying and mental illness. 8 Before proceeding with the analysis that led us to our conclusion, a comment on scope is in order. Arguments have been made, First, s.241.2(1)(b) requires that individuals be “capable of making for example by Dianne Pothier, that Carter v. Canada (Attorney decisions with respect to their health.” General)4 excluded individuals whose sole condition is a mental illness.5 Barbara Walker-Renshaw and Margot Finley point out Second, 241.2(1)(c) requires that individuals have a “grievous and that arguments have been made in the alternative to the eff ect that irremediable medical condition.” S.241.2(2) then states: Carter “leaves open the possibility that it would be unconstitutional to bar a capable adult from making the fundamentally important (2) A person has a grievous and irremediable medical condition and personal medical decision that he or she can no longer tolerate only if they meet all of the following criteria: (a) they have a the irremediable suff ering of a treatment-resistant, severe mental serious and incurable illness, disease or disability; (b) they are illness.”6. Th e leading authority on this point is Canada (Attorney in an advanced state of irreversible decline in capability; (c) that
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illness, disease or disability or that state of decline causes them In terms of the Carter decision, the concept of reasonable enduring physical or psychological suff ering that is intolerable foreseeable death is consistent with the factual to them and that cannot be relieved under conditions that they circumstances of Carter and persons in the situation of consider acceptable; and (d) their natural death has become Ms. Taylor and Ms. Carter i.e., taking into account all reasonably foreseeable, taking into account all of their medical of the patient’s medical circumstances, they were on an circumstances, without a prognosis necessarily having been irreversible trajectory toward death. In all of the medical made as to the specifi c length of time that they have remaining. circumstances of the person, it is fairly clear to the medical practitioner/nurse practitioner (and the second confi rming Explicitly with respect to mental illness, s.9.1(1) of the Act practitioner) that the person is on an irreversible trajectory establishes: toward death, even if the practitioner cannot give a specifi c period of time for the prognosis.9 Th e Minister of Justice and the Minister of Health must, no later than 180 days aft er the day on which this Act receives Advanced state of irreversible decline in capability royal assent, initiate one or more independent reviews of issues relating to requests by mature minors for medical assistance in When combined with the requirements that death be dying, to advance requests and to requests where mental illness reasonably foreseeable and that the person be suff ering is the sole underlying medical condition. intolerably, the requirement to be in an advanced state of irreversible decline ensures that medical assistance in Section 9.1(2) then establishes: dying would be available to those who are in an irreversible decline towards death, even if that death is not anticipated in Th e Minister of Justice and the Minister of Health must, no the short term. Th is approach to eligibility gives individuals later than two years aft er the day on which a review is initiated, who are in decline toward death the autonomy to choose cause one or more reports on the review, including any fi ndings their preferred dying process.10 or recommendations resulting from it, to be laid before each House of Parliament. It should be noted here that the government’s glossary defi nition does not even include the word “capability.” It should because the use of that term introduces serious ambiguity into the legislation 2. What does the legislation mean –capability to do what? I can be in an advanced state of irreversible with respect to mental illness? decline in capability to see (i.e., I am blind as a result of macular degeneration) or to regulate my blood sugar levels (i.e., I have adult-onset diabetes). Have I met this criterion? Furthermore, the a. Th e government’s interpretation text of the defi nition of the phrase “advanced state of irreversible decline in capability” literally adds nothing beyond that which is According to various documents and public statements, the included in the defi nition of “reasonably foreseeable death.” government would have Canadians believe that individuals whose sole underlying condition is a mental illness are excluded from Th e government’s glossary does not off er a defi nition of “incurable” access to medical assistance in dying. In its online glossary re: and the online information provided by the government about the terminology used in the legislation, the government states the new legislation (posted aft er it came into force) inexplicably leaves following: out the element of “incurable” in its description of the eligibility criteria.11 However, conclusions can be drawn about what the Reasonably foreseeable death government intended to capture from testimony provided during the process of Parliament reviewing the draft legislation. According “Natural death has become reasonably foreseeable” means to the government, “incurable” means something other than its that there is a real possibility of the patient’s death within dictionary defi nition, i.e., “cannot be cured by any means.” Rather, a period of time that is not too remote. In other words, the it means, to paraphrase Minister of Health Jane Philpott, “cannot patient would need to experience a change in the state of be cured by any means available and acceptable to the patient, their medical condition so that it has become fairly clear that not contraindicated for the patient, and not inappropriate.” When they are on an irreversible path toward death, even if there is asked about the meaning of “incurable” in the bill when appearing no clear or specifi c prognosis. Each person’s circumstances before the Senate, Minister Philpott said: are unique, and life expectancy depends on a number of factors, such as the nature of the illness, and the impacts On the matter of curability, there are a lot of reasons why of other medical conditions or health-related factors such something is incurable. Sometimes it’s because no cure as age or frailty. Physicians and nurse practitioners have is known. Sometimes it’s because, for the cure that is the necessary expertise to evaluate each person’s unique available, the patient has a contraindication to whatever circumstances and can eff ectively judge when a person is that treatment might be. Sometimes there’s no access to on a trajectory toward death. While medical professionals that treatment in a particular country. Sometimes it’s a do not need to be able to clearly predict exactly how or matter that the doctor and the patient make the decision when a person will die, the person’s death would need to that that particular treatment is inappropriate given be foreseeable in the not too distant future. the circumstances. Sometimes people are not able to be cured because of the fact that there’s a requirement in the
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relationship between a provider and a patient of informed • a mental illness reduces your ability to make medical consent and that a patient needs to consent to accept a decisions.14 treatment. Further evidence that the government believes the legislation All of those situations need to be necessary for someone to excludes patients whose sole underlying condition is a mental be able to avail themselves of a cure. Th is is a way of being illness is the statutorily mandated review and reporting back to able to defi ne the specifi c circumstance in which the doctor Parliament on the issue of “requests where mental illness is the is looking at this patient and saying, “I cannot cure this sole underlying medical condition.”15 S.9.1(1) places these requests patient’s problem, and therefore they meet the criteria.” 12 in the same category as requests by mature minors and advance requests, which are both excluded by the Act. Focusing on the defi nitionally limiting feature of “acceptable to the patient,” Joanne Klineberg, Senior Counsel, Criminal Law During the period of debate over Bill C-14, the Ministers of Policy Section, suggested in testimony before the Senate Standing Health and Justice both reiterated the government’s position that Committee on Legal and Constitutional Aff airs that “incurable” individuals whose sole underlying condition is a mental illness must be understood as being limited to treatments that are would not qualify for medical assistance in dying under the acceptable to the patient as, under the criminal law, no person legislation.16 should be compelled to undertake a medical treatment without their consent even if such treatment might be curative: b. An alternative interpretation
Finally, I would conclude that the criminal law itself Contrary to the government’s interpretation of the role of mental prohibits administering a medical substance to a person illness under the legislation, it can be argued that the legislation against their wishes. Th at is the crime of assault. Th e does not exclude all individuals whose sole underlying condition criminal law has to be interpreted consistently, as a is a mental illness. Th is is because it is possible for a person whose whole. So it’s not possible to interpret “incurable” in Bill sole underlying condition is a mental illness to meet the eligibility C-14, were it to pass, as though it would require a person, criteria set out in the legislation. 1) A person with mental illness can compel a person, to undertake a medical treatment that have decision-making capacity. 2) Mental illness can a) be incurable, they otherwise don’t consent to. Th at is one section of the b) have brought the patient to an advanced state of irreversible Criminal Code compelling what is criminally prohibited decline in capability, and c) cause the patient enduring physical or by virtue of another section of the Criminal Code. psychological suff ering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable. 3) I think our answer would be that “incurable” has to be Th e “natural death” of a patient whose sole underlying condition interpreted in this context in light of standard medical is a mental illness can be “reasonably foreseeable.” Furthermore, practice. So the willingness of the patient to undertake a a person whose sole underlying condition is a mental illness can medical treatment is part of determining whether or not simultaneously meet all of the criteria (as is required for eligibility). the condition is incurable. Consider each of these claims in turn.
… Capacity
Th is word has to be understood in a manner that’s Persons with mental illness can be capable of making decisions consistent with the rest of the Criminal Code. It can’t be with respect to their health – even where the consequences of the interpreted to require individuals to take treatments that decision are death.17 they don’t want. Th at would be counter to other provisions of the same act. Th at would be an interpretation that I don’t Canadian law has a long history of embracing this conclusion.18 think could be sustained.13 Th e Canadian Psychiatric Association has recognized that patients with psychiatric illness can have capacity to consent to treatment In other words, the government testifi ed that the criterion should that carries a risk of death, or to refuse treatment even where the be understood as “incurable by any treatments available and inevitable consequence is death.19 One illustrative Canadian case acceptable to the patient, not contraindicated for the patient, and report describes a patient with end-stage severe anorexia nervosa not inappropriate.” in which clinicians allowed the patient to refuse life-sustaining treatment on the grounds that she was highly likely to die from the Turning to the application of the legislation to individuals whose illness and that her suff ering was unbearable.20 Similar decisions sole underlying condition is a mental illness, the government’s have been made by other treatment teams on the grounds that online explanation claims that: anorexia is an example of a chronic treatment-refractory and terminal illness with, in some cases, a deteriorating course that [p]eople with a mental illness are eligible for medical assistance leads to physiological collapse, starvation, and death.21 Other in dying as long as they meet all of the listed conditions. authors have noted that even in the presence of severe depression, However, you are not eligible for this service if: a decision that one’s life is intolerable may not just be a symptom of the illness, and that some treatment refusals in the context of • you are suff ering only from a mental illness; depression, even if they result in death, may be legitimate decisions • death is not reasonably foreseeable when considering made by a competent individual.22 Th e concept of a rational suicide, all the circumstances of your medical condition; or when there is a realistic appraisal of the prognosis and treatment
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© 2016 Journal of Ethics in Mental Health (ISSN: 1916-2405) B options, has also been extended to people with schizophrenia.23 Recent papers on the legal regulation of MAiD in Canada for Indeed, even some of the most vigorous critics of permitting persons with mental illness also concede or acknowledge the fact access to medical assistance in dying to individuals with mental that some mental illness is incurable.35 illness concede that at least some patients with mental illness have capacity for MAiD.24 Finally, we can turn again to Canada v EF. In this case, the physicians testifi ed and the trial judge found that EF’s severe Finally, in Canada (Attorney General) v EF, the physicians testifi ed conversion disorder was “irremediable.” For example, the Court and the trial judge found that a patient with severe conversion of Appeal noted: disorder had decisional capacity for medical assistance in dying.25 As noted by the Court of Appeal, Physician B, a medical doctor with 40 years’ experience who is competent to provide physician assistance in dying, While her condition is diagnosed as a psychiatric one, deposed that, in her opinion, there are no further treatment her capacity and her cognitive ability to make informed options for the applicant that would off er any hope of decisions, including providing consent to terminating her improvement in her condition, or meaningful reductions life, are unimpaired. … Her mental competence is not in in her symptoms. She stated: ‘Given the length of time dispute.26 the symptoms have been present, the treatment history and her lack of response, I considered her condition to Incurable be irremediable.36
Mental illness can be incurable. In addition to the above cases in which a mental illness was incurable by any means, there are even more cases in which a Most studies that examine treatment for psychiatric illness focus mental illness is incurable by any means acceptable to the patient. on those who benefi t from the treatment, and yet there are always Given the position on the meaning of “incurable” taken by Minister patients who do not respond. Th e Sequenced Alternatives to of Health Jane Philpott and the Department of Justice senior Relieve Depression (STAR*D) trial, a rigorously conducted and counsel Joanne Klineberg described earlier, it is important to evidence-based trial funded by the National Institute of Mental recognize that some treatments for individuals with mental illness Health (NIMH), illustrated that only 70 percent of participants are intolerable to patients. responded, altogether, following four sequential medication trials.27 Th is left 30 percent of patients still unwell. More disheartening Indeed, in psychiatry, there are times when clinicians agree to is that one year later, 71 percent of the responding patients had shift the goals of care away from cure or active treatment toward relapsed.28 palliative care. Most publications on palliative care for mental illness are in the treatment of refractory anorexia nervosa. Here STAR*D involved outpatients, who are, relatively speaking, a less repeated attempts at re-feeding can become too painful and severely ill population. Another study, using inpatients, took place intolerable to the patient: both nasogastric tube and gastrostomy in a tertiary care centre specialized in treatment-resistant mood tube insertions are invasive and painful; patients oft en struggle disorders; here, 39.8 percent did not achieve remission.29 Further, during insertion and experience extreme distress; feedings in a 2010 clinical trial using one of the most invasive treatment themselves can cause both physical and psychological discomfort; techniques, anterior capsulotomy, in the most carefully controlled and this type of forcible treatment not only can be terrifying and trial conditions, only 50 percent of patients with refractory traumatic, but can also rupture the precious therapeutic alliance. depression responded; these patients had already failed an average Th erefore, at times in anorexia, the course of the illness is too of eight antidepressant medications from four classes, plus an severe, death is the likely outcome, and palliative care is seen to average of two courses of electroconvulsive therapy (ECT).30 be the only humane alternative.37
Although psychiatric treatment continues to advance, there Of note, it is oft en the case that the more invasive therapies, such as remains a very signifi cant proportion of patients who do not ECT, deep brain stimulation, and psychosurgery, are felt by patients recover despite high quality psychiatric care. Th e above statistics to be unacceptable. Side eff ects of ECT, a well-evidenced treatment focus on individuals with depression, but similar statistics apply for highly acute or treatment-resistant depression, include the to numerous other psychiatric illnesses. Obsessive-compulsive following: headache, nausea, jaw and neck pain, oral lacerations, disorder can also develop into a severe, chronic, and disabling dental injuries, and persistent muscle pain.38 Most disturbing to condition in which, of those who do not respond to fi rst- and some patients, and quite common, are the cognitive eff ects, which second-line treatments, less than half benefi t from invasive can include acute confusional states, anterograde and retrograde treatments such as deep brain stimulation and capsulotomy.31 amnesia (usually short-term but sometimes permanent), defi cits Over 20 percent of patients with anorexia follow a very severe in autobiographical memory, and word-fi nding diffi culties.39 and chronic course despite treatment,32 and despite high quality In one of the most rigourous medication studies for patients treatment, many patients with borderline personality disorder with schizophrenia, known as the CATIE trial, 74 percent of continue to have severe depressive episodes and experience patients discontinued treatment over 18 months, largely owing ongoing distress, anger, relationship dysfunction, and an to intolerability of side eff ects and lack of eff ectiveness.40 In general, underlying dysphoric state.33 as psychiatric illness progresses, the available treatments are overall less tolerable and less eff ective, and patients must endure Th e recent development of the subspecialty of palliative psychiatry more severe side eff ects, which are oft en detrimental to their is further evidence of the fact that some psychiatric illnesses are quality of life; with each failed treatment attempt comes further incurable.34 demoralization on the part of patients and their families.41
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Even the courts have recognized the intolerability of some with damaging physical consequences. In the case of severe eating treatments. Consider, for example, the description of side eff ects disorders, patients may experience the irreversible consequences provided in Fleming v Reid: of malnutrition, which can include organ failure, cognitive decline, and multiple fractures from premature osteoporosis. [T]he effi cacy of the drugs is complicated by a number of Clinically, one of the authors has encountered patients who are serious side eff ects which are associated with their use. permanently and severely physically disabled, or are left in the ICU Th ese include a number of muscular side eff ects known in a permanent vegetative state as the result of repeated suicide as extra-pyramidal reactions: dystonia (muscle spasms, attempts. Unfortunately, then, there are times when no eff ective particularly in the face and arms, irregular fl exing, writhing and acceptable biomedical treatment exists and severe mental or grimacing and protrusion of the tongue); akathesia illness can lead to a self-perpetuating and deteriorating cycle of (internal restlessness or agitation, an inability to sit still); irreversibly reduced capability over time. akinesia (physical immobility and lack of spontaneity); and Parkinsonisms (mask-like facial expression, drooling, When mental illness of any kind is severe enough, individuals muscle stiff ness, tremors, shuffl ing gait). Th e drugs can may cease to eat, drink, or attend to hygiene or other kinds of also cause a number of non-muscular side eff ects, such self-care. Th ey oft en become increasingly isolated and may become as blurred vision, dry mouth and throat, weight gain, unable to engage in social relationships, which further exacerbates dizziness, fainting, depression, low blood pressure and, their illness. Th e risk of homelessness is signifi cant; access to less frequently, cardiovascular changes and, on occasion, education and job opportunities can diminish as the illness sudden death. worsens. Individuals with severe persistent mental illness (SPMI) may cease to seek medical attention when these challenges arise; Th e most potentially serious side eff ect of anti-psychotic furthermore, they oft en no longer participate in preventive health drugs is a condition known as tardive dyskinesia. Th is is a care, which then leads to an increased risk of undetected serious generally irreversible neurological disorder characterized illnesses such as cancer and heart disease.43 Although outcomes by involuntary, rhythmic and grotesque movement of the in Assertive Community Treatment (ACT), considered the gold- face, mouth, tongue, and jaw. Th e patient’s extremities, standard form of care for people with SPMI, which includes social neck, back and torso can also become involved. Tardive forms of support (including supported housing, case management, dyskinesia generally develops aft er prolonged use of activities, education, substance abuse counseling etc.) are in some the drugs, but it may appear aft er short term treatment ways better than in other models, a considerable number of these and sometimes appears even aft er treatment has been patients still do not improve signifi cantly or recover.44 Recent discontinued.42 data from the Housing First project, with multiple sites across Canada in which patients are provided with ACT plus housing It is therefore not surprising that some individuals with mental and measured against those receiving “treatment as usual,” indicate illness refuse some treatment and, if “incurable” means (as Minister comparatively improved overall quality of life, stability of housing, Philpott and senior counsel Joanne Klineberg) “cannot be relieved and community function in the former group. Even then, only by a means acceptable to the patient,” then two groups will meet 73% in the former group remained in housing, and there were the criterion of incurable under the legislation: 1) those for whom no signifi cant diff erences in severity of psychiatric symptoms there is no treatment available; and 2) those for whom there is a or substance use between groups; furthermore the eff ect size for treatment available but who fi nd the treatment to be unacceptable. diff erences between groups with respect to safety was minimal.45 In addition, a 2010 Cochrane meta-analysis found no very signifi cant Irreversible decline in capability diff erences in all-cause mortality for patients with severe and persistent mental illness involved in intensive case management Mental illness can cause an irreversible decline in capability. (including but not limited to assertive community treatment ACT) versus standard care.46 Even this optimized treatment, then, leaves As with the term “incurable,” “irreversible” might mean “cannot many with severe and life-threatening symptomatology. It is also be reversed by any means” or “cannot be reversed by any means the case that some patients fi nd the social interventions to be available and acceptable to the patient, not contraindicated for too intrusive or distressing and reject them. Th erefore it can be the patient, and not inappropriate.” Th e logic of the justifi cation concluded that, at least in some cases, the decline in capability off ered by the government for the narrower view of “incurable” may not be mitigated by social interventions or, where social applies equally here to “irreversible” and so it seems reasonable to interventions might be eff ective, they might not be acceptable to assume that the government, if asked, would defi ne “irreversible” the patient. Th e decline will therefore again be irreversible. as “cannot be reversed by any means available and acceptable to the patient, not contraindicated for the patient, and not inappropriate.” Enduring intolerable physical or psychological suff ering Th at said, as with “incurable,” mental illness can cause a decline in capability that cannot be reversed by any means. It can also Mental illness can cause intolerable physical and psychological cause a decline in capability that cannot be reversed by any means suff ering. available and acceptable to the patient, not contraindicated for the patient, and not inappropriate.” Consider the following examples. Suff ering in mental illness can be severe, unbearable, and intractable. Th e anguish, loss of self, disorientation, anxiety, and For some persons with bipolar disorder, repeated and uncontrollable loss of perceived meaning in life that contribute to suff ering in manic episodes increase the risk for harm resulting from risky or mental illness can contribute to a state of not just mild and transient dangerous behaviours, and can lead to fi nancial and social ruin suff ering, but to severe, constant, and unbearable suff ering.47
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Author David Foster Wallace, who died by suicide in 2008 at It can therefore reasonably be concluded that refractory depression age 46 following decades of refractory depression, anxiety, and and other forms of mental illness can be a source of both physical substance abuse, once described the experience of psychic suff ering and psychological suff ering. as follows: Reasonably foreseeable It is a level of psychic pain wholly incompatible with human life as we know it. … It is a sense of poisoning that pervades Th e natural death of an individual with mental illness can be the self at the self’s most elementary levels. It is a nausea of reasonably foreseeable (even in the absence of a co-morbidity). the cells and soul. [Its emotional character is] … a sort of double bind in which any/all of the alternatives we associate Th e lifespan of patients with severe and persistent mental illness is with human agency — sitting or standing, doing or resting, reduced by 10-20 years, with death being sometimes due to what speaking or keeping silent, living or dying — are not just would be described as “natural death” in the context of non-mental unpleasant but literally horrible.48 illness (e.g., malnutrition and infection).54 It should be noted here that while “natural death” is not defi ned in the legislation, it seems In the same passage, Wallace also described depression as an reasonable to assume that it means the same thing as when it is used “invisible agony,” which he likened to being trapped in a burning on medical certifi cates of death. Th ere it means death not caused by building. One of the authors has witnessed patients with severe an external event such as homicide, suicide, or accident. Anorexia and chronic depression attempting to cut out their hearts or other nervosa is one clear example of a psychiatric condition that can internal organs, which they describe as causing overwhelming cause “natural death” (i.e., death without a lethal co-morbidity, physical pain. Other patients with chronic, severe refractory homicide, suicide, or accident). Th ere is certainly such a thing as depression have described a sense of being suff ocated or strangling, “terminal” or “end-stage” mental illness.55 chest pain, generalized burning pain, severe gastrointestinal distress, limb pain, and of generalized pain and weakness, just to It is important to note here the interpretation of “reasonably name some of the suff ering caused by mental illness. Psychiatric foreseeable” as it was applied by the ministers of Justice and illness can also directly cause physical pain in conversion disorder. Health to the facts of Kay Carter (one of the women at the heart Patients with certain types of schizophrenia experience chronic of Carter). In responding to the debates in the House, the Senate, and painful somatic delusions and hallucinations — genuine and the public arena about the legislation, the ministers repeatedly physical discomfort and pain that is the product of psychosis.49 stated that Kay Carter’s natural death was reasonably foreseeable.56 Th is pain can be just as real, and agonizing, as the pain caused by However, Kay Carter’s condition was not terminal. She had spinal somatic illness, and it cannot always be treated successfully with stenosis and could have lived with that for years. Aft er that fact was psychotherapy or medication. pointed out to them, the ministers explicitly based their conclusion that her death was reasonably foreseeable on the fact that she was Patients with depression are well known to experience painful elderly and frail.57 Th erefore, on this logic, an individual whose sole somatic symptoms that are unexplained by medical investigations. underlying condition is a mental illness would meet the reasonably In an international study, Simon et al.50 examined data for 1146 foreseeable criterion if she was old and frail. patients with depression selected from a World Health Organization collaborative study and found that 50 percent experienced medically In addition, the government’s conclusion that Kay Carter’s natural unexplained somatic symptoms, including physically painful death was reasonably foreseeable rested fi guratively if not literally symptoms. Similar reports of associated medically unexplained on actuarial tables (given their reliance on age and frailty). Th e pain and its eff ects on quality of life exist for generalized anxiety logic of this could see individuals with mental illness meeting the disorder with or without comorbid depression.51 Th ese symptoms reasonable foreseeability criterion even when not old as Kay Carter pose a signifi cant burden on quality of life in addition to the burden since the phenomenon of “premature mortality” is well-established of the mental illness itself.52 for individuals with mental illness and so an actuarial table for a relatively young individual with a mental illness might place Finally, here again we can turn to the recent case of Canada them closer to death than Kay Carter was at 89. For example, the (Attorney General) v EF, in which the Alberta Court of Appeal World Health Organization points out that “[p]eople with severe concluded that a competent woman with a psychiatric condition mental disorders on average tend to die earlier than the general was indeed experiencing enduring intolerable suff ering. population. Th is is referred to as premature mortality.”58 Th erefore, even before the onset of some other condition that would cause E.F. is a 58 year old woman who endures chronic and their death, even discounting for suicide, homicide, or accident, intolerable suff ering as a result of a medical condition even younger than 89, they could be predicted to have a lifespan diagnosed as ‘severe conversion disorder’, classifi ed as short as Kay Carter’s would have been (as she had no terminal as a psychogenic movement disorder. She suff ers from illness). involuntary muscle spasms that radiate from her face through the sides and top of her head and into her shoulders, 3. Conclusion causing her severe and constant pain and migraines. Her eyelid muscles have spasmed shut, rendering her eff ectively It can be concluded that, under the new legislation, it is simply blind. Her digestive system is ineff ective and she goes not the case that patients are not eligible for medical assistance without eating for up to two days.53 in dying if they are “suff ering only from a mental illness.”59 Th e government should therefore amend its published documents and future public statements to correct the misinformation they
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© 2016 Journal of Ethics in Mental Health (ISSN: 1916-2405) B have provided to health care providers and the public. If they do and irremediable medical condition, you must meet all of the not do so, they will be responsible for the extended, enduring, following conditions. You must: and intolerable suff ering of those individuals denied access to • have a serious illness, disease or disability the medical assistance in dying, to which they are entitled under • be in an advanced state of decline that cannot be reversed the legislation. • be suff ering unbearably from your illness, disease, disability or state of decline; and • be at a point where your natural death has become reasonably foreseeable, which takes into account all of your Footnotes medical conditions.” 12 Debates of the Senate, 42nd Parl, 1st Sess, Vol 150, No 41 (1 June 1. An Act to amend the Criminal Code and to make related 2016) at 1650 (Dr. Jane Philpott), online:
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Care as a Last Resort in the Treatment of Refractory Anorexia Recovery, Maintaining Hope, and Building Morale” (2012) 46:2 Nervosa” (2010) 43:4 Intl J Eating Disorders 372 [Lopez et al.]; Australian & New Zealand J Psychiatry 92 [Berk et al.]. Amy Campbell & Mark Aulisio, “Th e Stigma of ‘Mental’ Illness: 35 For an implied concession, see Charland et al., supra note 3: Anorexia and Treatment Refusal” (2012) 45:5 Intl J Eating “psychiatric disorders … are oft en treatable” (i.e., not “always Disorders 627 [Campbell & Aulisio]. treatable”). For an explicit acknowledgement, see Mona Gupta, 22 Mark Sullivan & Stuart Youngner, “Depression, Competence, “A Response to ‘Assisted Death in Canada for Persons with Active and the Right to Refuse Lifesaving Medical Treatment” (1994) Psychiatric Disorders’” (2016) 9 J Ethics in Mental Health 1 at 1, 151:7 American J Psychiatry 971; Samuel Brown, C. Gregory online: < www.jemh.ca/issues/open/documents/JEMH_Open- Elliott, & Robert Paine, “Withdrawal of Nonfutile Life Support Volume_Commentary_Response_Assisted_Death_in_Canada- aft er Attempted Suicide” (2013) 13:3 American J Bioethics 3. June2016.pdf>. She contends: “Th ere are times in the course of 23 Jeanette Hewitt, “Rational Suicide: Philosophical Perspectives clinical care of a medical problem or set of problems when there on Schizophrenia” (2009) 13:1 Medicine, Health Care and is nothing left to off er to alleviate a patient’s suff ering from that Philosophy 25. very problem. Th is is as true in psychiatry as it is in any other 24 Scott and Lemmens caution: “A further concern is that some area of medical practice.” patients who request assisted dying because of a psychiatric 36 EF, supra note 7 at para 63. illness may not meet the criteria for mental capacity. Although 37 Lopez et al., supra note 21. psychiatric diagnoses should not be equated with incapacity, some 38 C Wijeratne, GS Halliday, & RW Lyndon, “Th e Present Status of conditions (e.g., psychotic illnesses, neurocognitive disorders, Electroconvulsive Th erapy: a Systematic Review” (1999) 171:5 severe depression, anorexia nervosa and intellectual disability) Medical J Australia 250. may increase the risk of incapacity” (emphasis added). See 39 Sidney Kennedy et al., “Canadian Network for Mood and Anxiety Scott Y.H. Kim & Trudo Lemmens, “Should assisted dying for Treatments (CANMAT) Clinical Guidelines for the Management psychiatric disorders be legalized in Canada?” (21 June 2016) of Major Depressive Disorder in Adults: IV Neurostimulation Can Medical Assoc J. Similarly, Charland et al. argue, “Th ese Th erapies” (2009) 117:1 J Aff ective Disorders 2009S44. stipulations provide a safeguard based on a recognition that 40 Jeff rey Lieberman et al., “Eff ectiveness of Antipsychotic Drugs in psychiatric disorders may compromise the patient’s decision- Patients with Chronic Schizophrenia” (2005) 353: 12 New England making capacity” (emphasis added). See Charland et al., supra J 1209; National Institute of Mental Health, Clinical Antipsychotic note 3. Trials of Intervention Eff ectiveness (CATIE) Investigators, online: 25 In Carter v Canada (Attorney General), 2016 SCC 4, the Supreme
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127:1-3 J Aff ective Disorders 160-8. 52 Jong-Min Woo et al., “Importance of Remission and Residual Somatic Symptoms in Health-Related Quality of Life Among Outpatients with Major Depressive Disorder: a Cross-Sectional Study” (2014) 12:1 Health & Quality of Life Outcomes 1, online:
Acknowledgements: Th e authors thank Brad Abernethy for helpful comments on earlier draft s of this paper and Kate Scallion for her meticulous editorial assistance.
Competing interests:
Jocelyn Downie MLitt SJD FRSC FCAHS
Relevant previous roles: • Member of plaintiff s’ legal team in Carter v. Canada (Attorney General) • Member of Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying • Member of Royal Society of Canada Expert Panel on End of Life Decision-Making • Special Advisor to Senate Committee on Euthanasia and Assisted Suicide
Competing interests:
Justine Dembo MD FRCPC
Affi liations: • Member of Physician Advisory Council, Dying With Dignity Canada • Member of Medical Advocates group for Compassion & Choices • Member of Joint Centre for Bioethics MAID Task-Force and Mental Health Subgroup
Address for Correspondence: [email protected]
Date of publication: November 18 2016
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ADDENDUM
Since the publication of this paper, the Minister of Justice and Attorney General of Canada as well as Health Canada have taken steps that have confirmed that An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying) does not exclude all individuals whose sole underlying condition is a mental illness. In a letter to one of the authors (Downie), the Minister of Justice and Attorney General of Canada provided the following statement: In crafting the legislation, the Government intended to make medical assistance in dying available to all competent adults who are in decline and approaching the end of their natural lives, in order that they may have the choice of a peaceful death instead of a painful, prolonged, or frightening one. Our policy was to treat the specific reasons underpinning the final stage of an individual’s life as irrelevant to his or her eligibility. Accordingly, the eligibility criteria in the Act, including the definition of “grievous and irremediable illness” found in subsection 241.2(2) of the Criminal Code, were framed around the overall medical circumstances of a patient, viewed holistically, as opposed to focusing on the presence or absence of specific medical conditions or types of conditions. Moreover, the criterion requiring that an individual have a “serious and incurable illness, disease or disability” is stated in general terms, with no delineation between different types of conditions. The Act does not impose any requirement to demonstrate a particular or singular explanation for an individual’s advanced state of irreversible decline (241.2(2)(b)), nor why his or her natural death has become reasonably foreseeable (241.2(2)(d)). Under the Act, the eligibility criteria require an individualized assessment of a person’s medical circumstances by his or her medical practitioner(s). It is therefore not possible to make broad generalizations concerning whether a particular condition or illness qualifies or does not qualify someone for medical assistance in dying, as the person’s disease or illness is only one medical circumstance, albeit an important one, relevant to his or her eligibility. For example, the degree to which a particular condition has progressed, the efficacy of treatments on the individual, the person’s other medical circumstances, including his or her susceptibility to life-threatening infections or complications, the presence of other unrelated medical conditions, and overall frailty, along with other medical factors, are also relevant when considering an individual’s eligibility for medical assistance in dying. I wish to be clear that the Government’s intention with this legislation was and remains that a person who meets all of the eligibility criteria may receive medical assistance in dying. As long as all of the criteria are satisfied, the legislation is silent with respect to whether a person’s medical condition is a mental illness.
ADDENDUM
The Government’s policy intentions as described above are reinforced by the Minister’s description of the scope of the independent reviews mandated by s.9.1 of the Act. This review [in relation to requests for MAiD where a person’s mental illness is their sole underlying medical condition] is intended to focus on circumstances in which individuals with mental illnesses are not nearing a natural death and are not in a state of irreversible decline, and thus are not eligible for medical assistance in dying. The review is not intended to focus on cases where an individual with mental illness, in combination with other medical circumstances, would already qualify for medical assistance in dying, such as a competent person with incurable cancer in an advanced state of decline who also experiences mental illness, or where a mental illness, such as an eating disorder, is at such an advanced stage that the individual will die as a result. Furthermore, the Health Canada website no longer states that “you are not eligible for this service (MAiD) if: you are suffering only from a mental illness.” Rather, it now states the following: About mental illness and physical disability If you have a mental illness or a physical disability and wish to seek medical assistance in dying, you may be eligible. Eligibility is assessed on an individual basis, looking at all of the relevant circumstances. However, you must meet all the criteria to be eligible for medical assistance in dying, which means: • your natural death must be foreseeable in a period of time that is not too distant • you must be mentally competent and capable of making decisions at the time of your request • you must also be mentally competent and capable of making decisions immediately before medical assistance in dying is provided • the physician or nurse practitioner must ask you to confirm your choice before administering the service
You can withdraw your consent at any time and in any manner The government is to be commended for resolving the confusion. All those who advise or educate patients and healthcare providers should now ensure that their materials accurately reflect the fact that the Act does not exclude all individuals whose sole underlying condition is a mental illness.
Jocelyn Downie May 25, 2017